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Cognoscenti

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cognoscenti /kɒgnəˈʃɛnti/ pl. noun/ people who are especially well informed about a particular subject. Origin: late 18th century: Italian, literally ‘people who know,’ from Latin cognoscent-, ‘getting to know’

I broke the biggest promise I ever made to my mother the day I enrolled her in hospice. A month before she died she’d begged me never to do it. “I don’t want those volunteer do-good strangers in my house fawning all over me,” she said. Of course, I vowed to honor her wishes — only to bear her anger and my guilt when ultimately, three days before she passed away, my family and I brought hospice in. That was five years ago. And despite everything, I still thank God every day that I didn’t honor my word. Let me tell you why.

Hospice and palliative care is one of the least understood programs among families struggling with terminal illness. It conjures up images of kind-hearted strangers with no medical background stopping by to deliver soup and hold a loved one’s hand days before their death. Whenever I suggest to friends with incurably ill parents that they consider hospice, their eyes flash wide and they declare defensively, “We aren’t there yet! My parent isn’t about to die!” It’s an uneducated and unfortunate response.

Hospice and palliative care is one of the least understood programs among families struggling with terminal illness.

When a patient is deemed terminally ill, by definition it means there is no cure: there are only options for extending life for an uncertain amount of time. Frequently these options are miserable, painful and detrimental not only to a patient’s physical well-being, but also to her state of mind. Hospice and palliative care takes a different approach. Rather than focus on extending life, it strives to improve the patient’s current life — to comfort and help her enjoy quality time during her final months, weeks or days.

Like so many — myself included — my mother didn’t appreciate this when the brain tumor she’d been diagnosed with in 2008 came back after a course of radiation. We had only three options: do nothing and watch her suffer terribly; re-admit her to the hospital where they would pump her full of the steroids that she feared and despised; or enroll her in hospice so she could stay in her own bed, look over the gardens she created and pass quietly and pain-free.

Once our visiting nurse explained to me exactly where we were on the road-map to death, the decision to betray my mother’s wishes was clear. But delivering the news to her was not easy. As her nurse and I reviewed her reality, Mom looked me full in the eye and asked, “What do you want me to do?” I held her hand and told her what my father, brother and I had agreed: she should get into hospice immediately. Her jaw clenched tightly, she closed her eyes and turned her head away from me as she gave just the slightest nod of defeat. My heart broke into a million pieces, as I’m sure hers did.

Yet contrary to all that we’d anticipated, for the next three days we were not overrun with throngs of “soup deliverers.” Instead, a handful of highly trained staff visited the house daily: a primary nurse, a home-health aid and a counselor who guided our actions and shaped our expectations of what lay ahead. Hospice requires family to take on the bulk of the care-taking, so the staff taught us how to administer pain medications and which symptoms to watch for in order to keep my mother comfortable. I never felt more connected to my mom then the moment after I helped her adjust her pillows and gave her a morphine dose. “When did you get so brave?” she asked me. I told her that I had learned it from her. While that was true, it was also true that the hospice team had given me the courage and the information to act as her final caretaker — something I consider a life-changing gift to this day.

When my father was forced to face his own terminal illness just four months after my mother passed, the understanding of hospice he’d developed during my mom’s final days made it an option he proactively explored. For 19 years he’d struggled with congestive heart failure. While the first 16 years were tolerable thanks to his overall good health, his final three years were burdened with successive trips to the hospital that sapped his energy and hope.

The hospice team had given me the courage and the information to act as her final caretaker — something I consider a life-changing gift to this day.

For a few months following Mom’s passing he rebounded, determined to stay alive for his children, but ultimately, he started to wane. On Thanksgiving eve 2008, he was taken by ambulance to the local hospital where he lay on a cold metal gurney for three hours. The next day he could barely stand from the back pain resulting from the careening 911 ride to the ER and a night’s stay in a narrow, hard hospital bed. “I don’t ever want to go through that again,” he told us emphatically. “Next time I think I’m having a heart attack, I just want to stay put in my own home and have somebody come to me. Can we find out if hospice will do that?”

Not only could hospice do that; they did so for nine months. Every bit of stress connected to making a 911 call was eliminated and with his mind at ease, his quality of life improved exponentially.

Unlike my mother, my father understood that hospice brings together qualified nurses, therapists and specialty counselors to develop a unique pain management and care plan for each patient.

Until experiencing it first hand, my family — like so many others — was unaware of what should be common knowledge: that by combining top-notch medical care with a compassionate human touch, hospice enables us to choose the circumstances of our life, whatever the duration may be, and live in comfort and with dignity.

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Celtic Hospice

Well written, Rosanna. It is a privilege to be involved in such an honorable profession. Thank you for sharing your story.

Kelly Greene

My experience with Hospice was quite different with my mother. The nurse that would visit seemed to me a vulture waiting for her prey to die and actually said she couldn’t believe she was still alive. My mom had to go on Hospice in order for her insurance “Kaiser” to authorize a Bi-Pap machine for her lung condition. She was given morphine, although she had no pain which eventually shuts down the respiratory system. What is the difference between Hospice giving morphine that slowly kills the patient or Dr.Kevorkian? He goes to jail, Hospice gets glorified.

Hospice Nurse

Morphine depresses the respiratory drive that is true but it is done to improve the respiratory rate. When someone is struggling away with a respiratory rate of 32 a dose of morphine will help ease that breathing to a much easier rate of 18 or so. As an experiment try hyperventilating for even two minutes and you might start to feel some anxiety. As a hospice nurse I respect your right to care for your family member and to fear for how medications will effect them. I will say however I would like to use my knowledge of how the body works and my experience to help ease the suffering. When I am with my patients there is nothing more important then that person and their journey. If your experience wasn’t like that I sincerely apologize that we failed you, and more importantly your family member. I do believe if hospice is done the way it is intended there should be no regrets. You will definetely still feel the pain of your loved one, but you should never feel alone in the struggle.

Bari S

I wouldn’t go ahead and vilify the hospice nurse who “couldn’t believe she was still alive.” Are there a small percentage of hospice nurses who don’t exemplify hospice? Yes. More likely, this is a family member struggling with grief, and it’s attendant phases of anger and denial…with a little guilt thrown in. Perhaps what she perceived and heard wasn’t exactly what was said, though real to her. Most of us in hospice care learn to accept that’s as part of the process, and hope bereavement work helps the family. I’m a hospice nurse and the misunderstanding of how morphine works is rampant….even among clinicians. I will never ever forget the physician who said to me, “You hospice people! You kill people with morphine! ”

brettearle

One of the hidden issues, it seems to me, based on my own experiences, is that medical staff and administrators feel as strongly about their approach in Hospice as the feelings that families are experiencing, when witnessing their loved one’s pain and suffering.

And so what I mean, by that is that sometimes such conditions may set up the following inevitable clash:

Loved ones may look to blame and complain and to scapegoat and to find fault (including, of course, with themselves)–because of guilt and pain.

But, correspondingly, Hospice staff may harbor overt or hidden attitudes and agendas that may not have been fully vetted by those who train the staff who dispense, directly, these caregiver services in Hospice.

Although it is understandable, it isn’t enough for Loved Ones to be in pain–to the point where it might cloud their perception and judgment.

And, too, it isn’t enough that a medical practitioner has the requisite medical skills and even an agreeable bedside manner. That same Hospice professional might, indeed, have a personal approach or viewpoint that might be on a collision course with some families and some patient circumstances and situations.

Angela M. Stovall

I am sorry for your bad experience but I don’t understand why didn’t she just state the morphine was not needed? My father was obviously in complete control over what he needed for pain (his was beyond horrible) so why was your mother taking pain meds if not in pain? And maybe the key difference here is you felt forced to call them in, which is not right at all (thanks to the wonderful insurance companies), but to me they saved my sanity by organizing everything so I could spend that time with my father. Also without nursing at home he would have had to die in the hospital which HE DID NOT WANT because he had to have the IV.

Phoebe Morais

Thank you so much for sharing. More people need to hear this message. As a Palliative Care Nurse Practitioner, I strive every day to stave off the suffering of my patients. Thank you for recognizing and giving words to this largely unrecognized area of patient care.

Alita MacElhiney

This article is excellent and depicts the meaning of hospice. I am a hospice volunteer. Many people who have never needed to experience it are skeptical and believe hospice is the end. Hospice in general involves many different disciplines – physicians, nurses, social workers and volunteers.

Carolyn Fuller

My husband and I cared for my Mom, with the help of hospice, just over 30 years ago. That experience will always remain with me. Cradling my Mom and brushing her hair minutes before her final breath in the comfort of her own home are my final memories of a remarkable woman. With the help of Elizabeth Kubler-Ross, who had become a friend, and her hospice nurses, she was able to live her life fully and face death fearlessly with an open spirit.

Laurie Ciardullo

It’s a shame she repeated insults and diminishes the importance of “soup deliverers without a medical background” like me. l was actually requested by my hospice patient to purchase and deliver groceries, and when my own mother was at the end of her life recently, the service she needed most was help with meals so that she could continue to live on her own. Some patients actually appreciate do-gooders like me, most of whom offer our precious time as a way of paying it forward for the help our own loved ones had at their death.

Angela M. Stovall

I appreciate what you do as do MANY other people, thank you!

Barbara Schoofs Barrow

When my Mom was diagnosed with a terminal brain tumor – 6 weeks diagnosis to death – her only wish was to die in the comfort of her own home. The angels of Hospice made this possible and she passed peacefully with myself, my sister and her soul-mate husband of 46 years at her side. I make a donation to the Hospice program in my hometown every year in memory of her. They are truly angels of light who make dying with dignity and love as wonderful an experience as it can be.

Angela M. Stovall

My father was diagnosed with lung cancer 5 years ago and he fought the battle and won but the war was not over as it never is with lung cancer. He was a survivor for many years and when it came back he fought again until it had spread so far that his quality of life was so diminished that he was ready to stop treatments which were only making him more ill.
When hospice stepped in and he was able to come home on a morphine drip he was so happy! We had been in the hospital so long out of town it was nice for him to be able to be home again which he could have never have done without hospice. I had been through this before many years before when my grandmother also passed from lung cancer so we never had any questions about bringing hospice in again. I cannot even begin to express my gratitude in the short amount of time/space I have here I just want everyone to know they are for the patient AND for the family.
I don’t know what I would have done without you! THANK YOU!!!

maurice 513

Around these parts hospice means something different. Basically they give you morphine and starve you to death. But supposedly you don’t care about starving because of the drugs.

Bari S

Please understand that a dying patient doesn’t “starve to death;” as the body goes through the dying process, organ systems get sluggish and fail. It’s the dying that causes the “not eating,” not the other way around. The GI tract loses it’s ability to metabolize food. I’ve seen patients with feeding tubes whose families declined to stop feeding, die full of diarrhea, because the gut could no longer absorb the nutrients. Morphine reduces the oxygen demands of the body, so that failing lungs aren’t struggling. No hospice would give an amount of morphine that would kill. And there is no maximum dose of morphine; dosages are calculated according to prescribed formula.

Jill

This testamonial needs to be on the front page of every newspaper and news broadcast at 5p and 11p to help educate the public and medical field to hospice care…Thank you and may GOD bless

About this Contributor

Rosanna Fay is a former high tech marketing executive who switched gears to became an aging-in-place specialist after caring for her elderly parents. She writes for the Shriver Report.